ABSTRACT
This chapter details the creation and evolution of Lily’s Lymphedema, a work of ethnographic, creative non-fiction based on my 20 years of qualitative data and information collection about the chronic condition of lymphedema. The chapter includes a brief discussion of communicating ethnographic research findings using the technique of creative nonfiction. The ethnographic work that served as the basis for Lily’s Lymphedema is outlined, as are the relationships between elements of the story and empirical findings. Lily’s Lymphedema, which appears in its entirety along with this chapter, fills a gap in children’s literature in that there are no other books or stories in print about lymphedema that are written for young readers and their families. The chapter concludes with a discussion of the audience for Lily’s Lymphedema and future directions for representing the findings of ethnography as works of creative non-fiction.
